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Title: Advice on meds please... Post by 9erfan on Sep 11th, 2003, 5:41pm Ok, I apologize in advance for this being a redundant topic. I know it's been discussed before but I admit I probably didn't pay very good attention because I couldn't get any of the meds that people were talking about. So now I have insurance and I had an appt scheduled with a neuro for Sept 26. I went to see my GP today and I asked her for oxygen. She is normally very cool and gives me whatever I want but she didn't "feel comfortable" giving me scrip for oxygen. She really doesn't know anything about clusters. She wants me to get it from the neuro. She gave me a scrip for Verap for 180 mg ONCE a day. I know that's not very much compared to what people here are taking. She also gave me a scrip for Imitrex injections (but only 4). She says that's what the insurance will approve. But she was able to get ahold of the neuro dept and request a sooner appt so they are seeing me this Saturday. Instead of filling the scrip for Verap & Imitrex, should I wait until I see the neuro and ask for a higher dosage of Verap? What's a safe dosage for me to start at? How long will it take me to work up to an ideal dosage? What is an ideal dosage? 740mg? To all of you who are having success with Verap, are you all taking it multiple times a day? I took Verap many years ago but I think I never got above 240. Thanks for your help. V. |
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Title: Re: Advice on meds please... Post by 9erfan on Sep 11th, 2003, 6:38pm any thoughts? |
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Title: Re: Advice on meds please... Post by 9erfan on Sep 11th, 2003, 6:38pm Bueller? Bueller? |
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Title: Re: Advice on meds please... Post by ClusterChuck on Sep 11th, 2003, 6:45pm I think 180mg is where most start. For some that works. If not, then it is upped to a higher level, but gradually. It takes time to get into your system and work. My suggestion would be to fill the script and start taking it. It will give you some time with it by the time you see the neuro. It may take a week or two for it to start working. Unfortunately, this is going to take time to find the right level that will work for you, if any level will. Some need to take something else, with it, to get the desired results. For some, the verapamil does nothing. The only way you can find out, is to start on the regime. I hope this helps. Hope you get some PF time Chuck |
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Title: Re: Advice on meds please... Post by jonny on Sep 11th, 2003, 6:53pm V Baby, Chuck is right, start on the Verap now....it takes time to get into your system so you will be ahead of the game when you see the Neuro. The highest dose of Verap ive takin is 480, 240 twice aday but others have takin higher. See that neuro and take no prisoners.....LOL Good luck, babe ..................................jonny One last thing...if the Neuro dont ask if you already got trex ask for more.....LOL |
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Title: Re: Advice on meds please... Post by UnsolvedEquation on Sep 11th, 2003, 7:08pm Do the Verapamil like the docs says. I know alot of people that take some pretty hefty doses of the stuff but I can't handle more than 320 mg. More than that will slow down my heart rate til it's almost nothing. It CAN be dangerous ... so just like with any other med...be careful. Goodluck ! |
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Title: Re: Advice on meds please... Post by Not4Hire on Sep 11th, 2003, 7:21pm ...aww fer cryin' out LOUD, Virginia.... y'all been here long enough to know that if ya want an answer -- Look it UP!..... when them OleTimers get crotchety with a newbie, it's usually 'cuz they start spoutin' off DUMB/uninformed/ignorant/opinionated stuff.... yer none of the above.... I could answer all them questions.... but I'd hafta LOOKITUP.....and I'm too bizzy Admiring MySelf In My Cluster Mirror..... gawd them red eyes are OOOOgly...... ...just *giggin'* ya sister.... and I know yer bein' hit... so take this as it's given.... to cheer ya up and mebbe give ya a smile..... it's really all I can do thru this TV screen..... PF vibes to Ya......Steve(N4H) PS: and if yer Dr. won't give you OXYGEN. but WILL give DRUGS.....get a new doctor..... |
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Title: Re: Advice on meds please... Post by jonny on Sep 11th, 2003, 7:26pm LMMFYBO......Steve.....LOL ;D .......................................jonny |
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Title: Re: Advice on meds please... Post by Roxy on Sep 11th, 2003, 7:30pm Hey V.....just tried to call ya!! I'm on 180 mg twice a day. I just tried to cut back to 270 mg....and got hammered. Guess I'm stuck at that dose. Just start taking it now, get it in your system. You never can tell what dose will work till you try it, so you might be lucky and a low dose will work. I'm sooooo excited about meeting you, fubar, and SFChris....I can't wait!!!!!!!!! ;D If you need a little extra ammo, just let me know tonight....I'll pack some extra. |
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Title: Re: Advice on meds please... Post by OneEyeBlind on Sep 11th, 2003, 8:15pm Virginia, like everyone told ya ........ take the Verap and see what it does for ya. You never know what dosage it will start to help at !!!!!!!!!!!!!!! As far as the Imitrex ... depending on your insurance company they usually have a limit they will pay for. That is usually NOT enough to get you through the month so start working on the "letter of necessity" you will need to get past the insurance company bullcrap. Call your insurance company, ask what you need to submit for more Imitrex per month and get that paperwork going. Insist on the O2 from the neuro. This is usually covered by the ins co. And it's a great backup as an abortive especially when you aren't getting enough imitrex !!!!!!!!!!! Good luck !!!!!!!!!!!!! |
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Title: Re: Advice on meds please... Post by ozzman on Sep 11th, 2003, 8:49pm V, Just like everyone said, start soon çause it takes time to build up in your system. Now, when you get to your Neuro. Talk to him/her about the advantages and disadvantages of extended release, sustained release or "regular". Most of the literature and Goadsby himself strongly recommends using the regular kind. That's what I use and it works great at 320 mg One every 6 hours and taking it early has done wonders for me. Just a thought. Ozzy |
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Title: Re: Advice on meds please... Post by surfshi on Sep 11th, 2003, 8:58pm well its not a bad topic... And as far as paying attention, I remember now coming across wch.com a few months back, that I had been here B4. Because I was new to comps and the ch was in full bore, I had "forgot about it" Nothing against the site mind you its just that those darn things wipe me out. Must have been the celexa. 9er get your o2 asapfrom the neuro as its a godsend, for me anyway. I am currently using verapamil and found that at the peak of my cycle really did help. I started at a low dose 120 and gradually built to 720 then the cycle broke. Barely though_wew we that was a close one.anyway I was reluctant to stay on V only because "I didn't understand" so I had the doc take me off it, or did I remove myself,must have been the celexa.. You know the story of not wanting to take more meds and more and more . I wish I didnt halfto touch medication ever again in my life, thought the Im injecter was cool no needle but expensive.You and your doc will halfto find your target dose together. I started taking the V in the am 480 sr as a preventative, as prescribed, but I had to start taking it at night. Not sure why. hay 9er get your02 and let us know how the apt. goes...Surf |
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Title: Re: Advice on meds please... Post by Edna on Sep 11th, 2003, 10:36pm Hey Virginia, Not familiar with verap at all, but really think that is sucks that your doc would be quick to prescribe med but not O2?? Good luck at the neuro on Saturday and wishing you the best EDNA |
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Title: Re: Advice on meds please... Post by Cooked Brain on Sep 12th, 2003, 12:20pm Hi V, at the start i was on 3x40 mg a day, built up every week a little more to find the right dose and on 3x120 mg a day verapamil killed the beast for me, took for about three weeks to get there. The effective dose can be different for everyone this is just what my experience is. good luck and let us know how it goes... |
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